Important.
This is a general guide. Your child's situation is unique. Do not let this replace the conversations with your child's medical team.
After a neurosurgical operation, and at any time in a child living with a shunt, there is a short list of warning signs that should always prompt a phone call or an urgent visit. This page puts them in one place so you do not have to memorize anything. Print it or save it on your phone. If your child's team has given you their own instructions, follow theirs; different operations come with different rules.
Go to the emergency department now
Do not wait for a clinic appointment or a call back if your child has any of the following:
- Your child is very hard to wake, or does not respond to you normally.
- A seizure (fit), if it is new or different from seizures your child is known to have.
- Vomiting that keeps coming back, especially together with worsening headache or unusual sleepiness.
- One pupil looks clearly larger than the other.
- Sudden weakness of the face, arm or leg, trouble speaking, or trouble seeing.
- Trouble breathing, blue lips, or skin that is very pale and clammy.
- In a baby: a tense, bulging soft spot (fontanelle) while your baby is calm and held upright.
Call your local emergency number or go straight to the nearest emergency department. Take your child's medication list with you, and tell the doctors about any shunt or recent operation.
After an operation: the wound
Call your child's team the same day if you notice any of these around the wound:
- Spreading redness, warmth or swelling around the wound.
- Pus or cloudy fluid leaking from the wound.
- Clear, watery fluid leaking from the wound, or from the nose or ear after certain operations. This can be cerebrospinal fluid and needs checking quickly.
- The wound edges opening up.
- A fever of 38.0 °C (100.4 °F) or higher.
- Wound pain that gets worse day by day instead of better.
After an operation: how your child seems
Also call the team if, in the days and weeks after surgery:
- Your child is much more sleepy than expected, or is difficult to wake for feeds or meals.
- Headache is getting worse despite the pain medicines you were given.
- Vomiting starts or returns, especially in the morning.
- Your child seems confused, unusually irritable, or simply not themselves for more than a short spell.
- New weakness, numbness or unsteadiness, or a change in vision or speech.
- Your child loses an ability they had regained after the operation, such as walking or talking as before.
Children living with a shunt
A shunt can block or become infected at any time, weeks or many years after it was placed. A blocked shunt brings back the symptoms of pressure; an infected shunt often adds fever. Both are treatable, but they need to be seen quickly.
Possible shunt blockage
- Headache, especially in the early morning or waking the child from sleep.
- Vomiting, unusual sleepiness or irritability.
- Return of the symptoms your child had before the shunt was placed.
- In babies: a rapidly enlarging head, a bulging fontanelle, prominent scalp veins, or eyes that drift downward (the "sunsetting" sign).
- In older children the change is sometimes slower: falling school performance, personality change, or worsening coordination.
Possible shunt infection
- Fever without a clear cause, particularly in the weeks to months after shunt surgery.
- Redness, swelling or tenderness along the line of the shunt tubing on the scalp, neck, chest or tummy.
- Pain around the valve or tubing, or fluid collecting around it.
- In some children, tummy pain or new feeding problems.
If you suspect a shunt problem, have your child seen the same day. Tell the doctors your child has a shunt, and mention the type if you know it. If the valve is programmable, remind every doctor who plans an MRI, because some valves need to be checked and re-set after the scan.
After an ETV (endoscopic third ventriculostomy)
An ETV can close over, weeks or even years after the operation. If it does, the symptoms of hydrocephalus come back: headache, vomiting, unusual sleepiness, or in babies a growing head and a bulging fontanelle. Treat this exactly like a suspected shunt blockage and have your child seen urgently, the same day.
When in doubt, call
You know your child better than anyone. Teams expect calls from families after neurosurgery, and a call that turns out to be nothing is never a wasted call.
Keep three numbers written down where everyone in the family can find them: your neurosurgery team's clinic number, the hospital's after-hours number, and your local emergency number.
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